Examples of individuals with intellectual disabilities participating in research through the advisory approach include:

- Suggesting proper word usage for a national survey (Emerson et al., 2005).
- Acting as experts to explain their perspective of living with cognitive limitations after experiencing a specific therapy. This involvement led to repeated trialing and discussion of measures (Brooks & Davies, 2008).

In these examples, the individuals were actively involved in shaping the research, acting as more than just informants.

Examples of Involvement Utilizing the Advisory Approach

- May advise components of research design
- Recruitment strategies
- Collection & dissemination of methods

Cedarville University

The most common role for individuals with ID in research. It involves participation in prioritizing research and in decision-making regarding funding.

When individuals with ID’s, advise research teams about a project’s overall direction, or a specific issue. This can be done in a separate group or with others.

Advisory Approach

Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


Role of People with Intellectual Disabilities in Advisory Groups

People with ID who advise research may not be included at all in the study and they have no control over their level of involvement.  The researchers that request the individuals’ involvement decide the level of involvement.


Levels of Involvement within the Advisory Approach

This term is used to refer to how individuals with ID are involved in research through prioritizing design as well as advising on and disseminating on research.

Experts by Experience

- In collaborative groups, people ID are more likely to initiate or negotiate their involvement
- Individuals may find out about the research through advertisements or through connections with academics who have mutual interests 

Learn Before

Related

Learn After